On the three-year anniversary of his lifesaving liver transplant, four-year-old Luke Gerard is “perfect, a going concern” who never stops, according to his grandmother Carolyn Gerard.

And as for the guy who gave up 30 per cent of his liver for his nephew, “Oh my God, he’s a going concern too,” Carolyn says of Luke’s uncle Patrick, 38, whose liver was back to full function in a matter of weeks.

The risks of being a “living donor,” the multiple tests and biopsies ahead of the surgery to make sure his liver was a match, and the three-month liquid protein diet required to make his liver less fatty, were “absolutely” worth it, said Patrick, a tool and mould maker and father of two children.

“I get to see Luke all the time, and I’ve got a scar, that’s it.”

Within days of his birth, Luke was lethargic and not eating well, his parents Mark and Lindsay say. He was admitted to Windsor Regional Hospital when he was three days old and transferred to London’s Victoria Hospital two days later, where doctors quickly diagnosed him with argininosuccinic aciduria (ASA), a one-in-70,000 births genetic disorder that causes ammonia to build up in the blood due to the absence of an enzyme called argininosuccinate lyase.

The buildup can lead to lethargy, vomiting, neurological damage, seizures, coma and death, said Lindsay, who said Luke went into his first coma when he was just several days old.

She and Mark would take Luke to the hospital two to four times a week, sometimes in the middle of the night. He had blood work every Monday morning, and he had such a restricted diet they had to count out the 20 Cheerios he was allowed each day. The couple took shifts at night to make sure one of them was always watching over him.

Their doctors started talking about a liver transplant — a relatively new approach to treating ASA — when he was about nine months. The absence of the enzyme was preventing Luke’s liver from breaking down proteins and leading to the buildup of ammonia. A healthy liver would provide the enzyme that Luke was lacking and control his ammonia levels.

“We were really trading one medical condition (a transplant requires a lifetime of monitoring and anti-rejection drugs) with one that could lead to neurological damage and death,” Lindsay said. “We were considering him having a life or not having a life.”

They put Luke on the list for a donor in October 2013. In Ontario, where the average wait time for a liver is six months, a person dies every three days, on average, because they didn’t get an organ donation in time.

A liver is the second-most-needed organ. Of the 1,550 people currently waiting for an organ transplant in Ontario, about 1,100 are waiting for a kidney and 232 need a liver.

Last year, there were 275 liver transplants, with 224 coming from people who donated their livers when they died, according to the Trillium Gift of Life Network, the Ontario agency that co-ordinates, plans and promotes organ donations and transplants. April is

Fifty-one transplants came from living donors — people who gave up a portion of their liver so someone else can live. Livers are one of only two organs (the other being kidneys) that can be donated by a living donor.

Lindsay wasn’t a match for her son and Mark was ruled out because he’d earlier been treated for a melanoma (skin cancer). So they raised the issue with their families.

“We really got a great response,” Lindsay said of the many family members who stepped forward and offered to be tested.

“Patrick was the first to volunteer and the first to be assessed, and he was a perfect match,” said Lindsay.

It took several months of testing and preparations before the April 2014 transplant date. Patrick lost about 40 pounds on his three-month protein shake diet, getting his liver in ideal shape.

It took eight hours for Patrick’s liver-donor surgery at Toronto General Hospital. Mark and Lindsay were called when the liver was out, placed in a cooler and walked through a tunnel that went under the road (coincidentally called Gerrard Street) to Sick Kids hospital, where Luke’s surgical team was waiting.

The surgery went so well that Luke didn’t need a respirator as he left the surgery — a first for liver recipients at the hospital, according to his parents. They were told the family would need to stay in Toronto for three months while Luke recovered, but they went home in less than a month. His ammonia levels have been completely normal ever since.

Before the surgery, when so much of Luke’s life was taken up by feeling unwell, blood work, hospital stays and doctor visits, he was clingy and not very social.

“He really seemed to come out of that,” following the surgery, Lindsay said. “It was like he was a different kind of kid — active and social and wanting to see his grandparents.”

He could eat whatever he wanted and his medication regimen of a half-dozen different drugs taken four times a day, dropped down to two medications. He’s now in junior kindergarden, which he loves, said his parents. Because the transplant occurred when he was just 15 months old, Luke has no memory of it and little understanding of what happened.

The transplant didn’t cure Luke. He still has ASA, but it’s effects are less severe. He goes for blood work every three months, and every year he returns to Sick Kids for a checkup.

The Gerards, who live in Tecumseh, wanted to tell Luke’s story to encourage more people to register as donors. The 27 per cent registration rate in Windsor, though much improved from 2011 when only 16 per cent of people were registered, remains below the provincial rate of 31 per cent.

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